General
Chronic nature of our condition.
August 1, 2025
in General
Do you ever get lost in labyrinths of fears regarding the chronic nature of our condition?
Having gone through end-stage disease and being saved by a transplant means we have gone through hell - literally.
But it also means it can happen again when/if the organ fails yet again. How do you deal with those thoughts?
Tagged:
1 - 4 of 4 Replies
I do get lost especially when my partner starts talking about the future. I say hey, I’m praying for 5 years and hoping for 10. I try bringing my attention to today and do what is in front me. A non-transplant person could get hit by a car tomorrow. Everyone dies but it is a matter of when. When you face your mortality it changes you. I do not have the same perception of life post transplant. I’d like to think I enjoy each day more than I did pre diagnosis. Hopefully for the better.
I try to be positive about the future and hope that my transplanted organ functions efficiently for my lifetime whatever it is. While the possibility is real for a recurrence, I maintain an outlook that all will be well.
I try not to focus too much on the future. I pay close attention to my numbers and stay on top of things. 2 years ago, I was preparing to die because I had exhausted all options. The future was not a word that I could use in my vocabulary. I spent so much time dwelling on that. I know that at any moment this could end. I have chosen to take every opportunity presented to me and just savor the moments. 2 years life is good and I am choosing to just live in the moment/
Transplant Patient
I love all these pieces of advice and I do think similarly. Yet, in the middle of the night I worry about my future more for those who I am responsible for and those who love me. I worry I won’t be here to protect, provide and care. But as you all said - that is life as a human being. I think we have a unique perceptive on life as end-stage, facing death directly, and then as new-born almost, faces new challenges but not at all the extremes of the past. I would like to say that I don’t worry about petty, small everyday issues, but it is not entirely true. I wonder if that ever goes away when we live in a world where morals and ethics are not above board and people in general are not only good. Each year I promise to worry less and enjoy the moment more. The only time that truly happens is when I am with my daughter or I am in the middle of a very challenging debate/presentation and I cannot concentrate on more than the task at hand. I guess that is why my life truly is focused on being the best mother I can be, and the most intense professional…